eating issues

I have a a 12 year old son who has autism and has been diagnosed since he was 6.

He has always been fussy with his food, but just recently we caught him making himself sick on an number of occasions and we know of other times he has been sick many other occasion but we dont know if he has done that himself. He is also very underweight and all his bones are visible through his skin.

We had him back to camhs where we have been told it too early to diagnose anorexia . Also they said to give him vegetable fats in abundance such as nuts seeds and fish !! not gonna happen !

Lovely to meet you. Sorry to hear that you are having problems with your son's eating. We have had similar difficulties ourselves when our son was 15 and this was before we realised that he had Aspergers. We had a very difficult 2 years with him until we learnt about his particular way of thinking and had to adapt accordingly.

The most important thing here is to try to stay calm. The word "Anorexia" can conjure up so many fears and distress for parents but the key is to try to limit your son's anxiety. I agree with ColinCat let him have whatever foods he likes particularly if they are high in calorie. Maybe you can find ways to add extra oil or fat to the foods he likes in order to introduce more calories.

In my opinion it is important try to work out what might be causing the problem, if at all possible. Is it texture, smell or even colour of certain foods. Could he be obsessed with 'healthy' eating and/or exercise as our son is? A friend of ours used to make himself sick because he wanted to become vegetarian and couldn't bear to eat meat. If he has a special interest at the moment could this be the clue to it?

Professor Janet Treasure is a Psychiatrist who has done some research about the link between disordered eating and Autism/Aspergers. I believe she is based at the South London and Maudsley NHS Hospitals. It might be worth trying to contact her team to ask for some advice.

Hopefully you will soon find out the reason why he feels he has to do this and things will get back on track. The NAS helpline was of great support to us and you could also try the eating disorder support organisation called BEAT www.b-eat.co.uk/.../ for some information and support.

It may also be worth enlisting the help of a nutritionist to work out a diet that he is happy with that would allow him to gain a healthier weight. Please also keep going back to your doctors for some help as boys of your son's age need a lot of calories and can see a rapid weight loss especially if they are keen on sport. If you feel fobbed off by them, the NICE (National Institute for Health and Clinical Excellence) guidelines do tell the medical profession what you have a right to expect from them. You should be able to find these on the internet.

Good luck, I'm here for you whenever you feel in need of someone to offload to.

Having just trawled the NAS site, your reply seems most relevant to our son (13yo) who is rapidly descending down an eating disorder route. ASD/ADhD,with long felt traits of ODD or PDA. Battled to get help at CAHMS, rejected by LDcahms re higher than threshold IQ, just started seeing an 'Art Therapy Phycologist' but we aren't getting any advice as parents about how to deal with Harry's obsessiveness with eating, over exercise & toileting fascinations.... In fact not confident we're getting the right support for H, reckon he just enjoys 'his focus time' with child centered Cahms because it gets him time off school... I'm a persistent parent, just need to know which direction i should be putting most of my energies into? Hoping you are still active on this NAS forum.... or anyone else with ASC & Eating Disorder link. It's taking over my son's already heavily burdened life, and considerable effects upon the rest of life/family etc...all the usual stuff for a super parent of super ASC children

Do you believe your son has an actual Eating Disorder, such as Anorexia or Bulimia? If you do, I think that your son should be referred onto the Eating Disorder Pathway, so this could be a direction to pursue, if applicable. However, if you believe your sons relationship with food is more 'grounded' in his ASD, his obsessions or compulsions, then Art Therapy could really be a great help to him with this.

In this respect, please don't underestimate the potential worth of Art Therapy. Although I do appreciate that, for those who are (helplessly) witnessing it, rather than experiencing it themselves, it may well often look like a waste of time and load of 'feel good' meaningless rubbish. But, if it is done well, real 'work' definitely takes place, it can be fantastic, and can enable positive change to occur in 'real life' terms.

However, I think that it would be better for everyone if you did feel more involved in your sons treatment. Although attending his sessions would be inappropriate as this is his much needed 1:1 time with his therapist, perhaps you could instead arrange an appointment to meet with his Art Therapist/Psychologist alone, to discuss how you may help him best at home, reflect on his progress together, and to let them know you are feeling excluded.

thanks for replying - you mirror what the Therapist is telling me, so I will continue to keep the faith. The trouble is we, as Parents, don't have any access to advice. We want to prevent the manifestation of the eating disorder taking over his & therefore our lives. Not least to avoid further mental & physical health issues

Eating Disorder or ASC?? difficult to say as I have very little understanding of either. Cause & effect...

It appears there's a common link between the 2. Obsessiveness & sensory factors are strong in both, body image, perception, puberty, esteem, anxiety, having control over something unlike in most other areas of his life. It's a myriad of stuff, but one which our lack of understanding (Harry's challenge to communication) is at the heart of our mutual anxieties. It's a mess & we simply don't know what to do to help

coupled with the fact that ODD/PDA traits make it seemingly impossible to give any reasoned & simple advise. Whilst he's being given the opportunity to have his 'safe-space', he's increasingly going the other way with his eating/over exercise/toileting obsessions/body dismorphia.... Clearly very challenging for parents to experience, and go against better judgement to try & help

Think I'm just repeating myself now, going round in circles as ever

Assume that I just need to be making a nuisance of myself with Cahms, to get more eating disorder advice. Rather than adding to the fuel with Harry by giving attention to the problem, which he is so very adept at inducing

There is an information page here on the NAS site about eating problems in people with ASD which you can view here - http://www.autism.org.uk/about/health/eating.aspx. There is information about what the causes may be, strategies for managing difficulties with food, communication tips, and links to further information about coping with eating disorders in a child on the autism spectrum.

If you would like to talk to someone directly, please call the NAS Helpline on 0808 800 4104 (open 10am-4pm Mon-Thurs, 9am-3pm Fri).

Just to add, I’ve never had body image problems. I don’t care what shape it is, I wouldn’t of ever thought about that if my sister hadn’t brought body shape to my attention. To me, it’s a body, if it does it’s job, good, if not, fix it. I don’t care how my eyes and nose etc are arranged on my face, it’s a face, we all have one and we’re all beautiful. And this started when I was a little kid, 18 months old in fact, maybe even before, so it’s definitely not a problem with body image for me. It’s the whole thing about putting stuff in my body, like I’m a dustbin or something. I don’t like how food feels in my stomach, it can make my heart race, it can give me anxiety, it can make me angry, or tired, or snappy, it can do so many things to me and I don’t like it. There’s always the fear of what will happen when it hits the stomach. I don’t seem to get any strong reaction when I eat raw food so although it’s not the most exciting food in the world, it’s simple, quick to prepare, it’s nutritious and doesn’t harm me or send me weird in some way. It’s taken me a long time to work this out.